MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe


MPNE 2019 22nd- 24th March 2019 

13th March 2019 BR

As you know

we work best under pressure ;-) 

Annual MPNE conference for European Melanoma advocates

​22nd- 24th March 2019

arrival 22nd in the morning, we start early in the afternoon


Rue Royale - Koningsstraat, 250, 1210 Brussels, Belgium

Planning meeting ECAB (internal)

Thursday, 14.00- 18.00

MPNEhubs- invitation only

Thursday, 21st March 

19.30 MPNE hubs working dinner 

Friday, 22nd March
8.00- 12.00 MPNEhubs

Friday, 22nd March

13.00- 14.00

Block 1

1.1 QuickStart to MPNE2019, especially recommended for MPNE new-comers

The goal of this session is to make sure that everyone has the necessary knowledge to follow the rest of the weekend and we recommend every new-comer to attend. 

We do appreciate that also everyone else wants to make sure they REALLY have the Melanoma basics. However, if you have already attended a number of QuickStarts- this will be like the one you attended at your first visit.

We obviously continuously tweak and refine the content to be even clearer and more memorable- feel free to copy for your own conferences- but please, don't send us another feed-back 'This was just like last time, I already knew all of this?'- because that is JUST the intention!

Welcome to the conference and MPNE

Bettina Ryll

Melanoma in a nutshell

Bettina Ryll

Know your stage!

The Melanoma stage defines treatment options and prognosis, so is critical to understand. This is the compressed MPNE version on staging!

Violeta Astratinei and Gilly Spurrier, MPNE

MPNE 2019- the short version

What to expect from this weekend with brief introduction to sessions

Fredrik Östman and Bettina Ryll, MPNE

1.2 QuickStart Ocular Melanoma: parallel 

Anatomy of the Eye

Guilherme Neri Peris and Martina Rooijakkers

14.00- 15.00
Welcome Coffee

Meet your colleagues, also time to think and hang your posters! 

Parallel session and workshop program: please do not forget to submit your choices! 

Workshop program   here

Block 2

15.00- 15.50

Block 3

16.00- 16.50

Block 4

17.00- 17.50

Block 5

18.00 -18.50


Advocacy Speed Dating with Kacie

For those of you who are already getting worried- our advocacy speed dating is the most fast & fun way to get to talk Melanoma advocacy to a large number of people in a very short amount of time.

Coming for the first time? You'll have met the Melanoma advocate 'dinos' by the end of the session!

Been here many times before? You will know who is new, have heard some new perspectives and know whom to help!

20:00 Welcome Dinner

Saturday, 23rd March

8.00- 9.00 Breakfast 

9.00- 10.30
Session- thinking about resistance 

​On our forums, we regularly see patients who want to believe that the initial impressive results to targeted therapy (BRAFi and MEKi inhibitors) are permanent- and who are distraught and unprepared when resistance sets in. Patients are equally disappointed when immune therapy, hailed as the new 'cancer cure', does not work for them.
Understand the concepts of primary, acquired and reversible resistance and the current thinking about strategies how to overcome those. What are the next promising treatments in the pipeline? 

Introduction to the topic

Targeted therapies in Melanoma, primary versus acquired resistance, reversibility

Bettina Ryll, MPNE

Tumour heterogeneity as driver of resistance to targeted therapy

Julia Boshuizen, NKI Amsterdam, Netherlands

​further reading 

Cooperative targeting of melanoma heterogeneity with an AXL antibody-drug conjugate and BRAF/MEK inhibitors

Session- Resistance to immune therapy: an overview

John Haanen, NKI, Amsterdam, Netherlands

further reading​


  • Strategies now how to overcome resistance to targeted therapy
  • Interplay between targeted therapy and immune therapy- the best of 2 worlds?

10.30- 11.00 Coffee

11.00- 12.30

Session- Tackling resistance in Immune therapy- the latest thoughts

Immune therapies have changed Melanoma from a deadly disease to one with real hope for survival. Unfortunately, not for everyone. So this session will look into what is coming NEXT to tackle resistance to immune therapy

'Prevention is the best cure'- Cancer vaccines
Steinar Aamdal, Norway

Bi-directional antibodies

Jean-Francois Baurain, Brussels

Increasing your chances- Neo-epitope specific TCR (T-cell receptor) gene therapy

Successful immune therapy needs the right type of neo-epitopes that allow T-cells to recognise cancer cells to destroy them. At the moment, it is chance what type of neo-epitopes a patient has- anything one can do about that?

John Haanen, NKI Amsterdam, Netherlands

Discussion and summary

12.45- 13.45 Lunch

14.00- 16.00

Afternoon topic: Access to innovative new therapies

Progress in Melanoma therapies has been phenomenal- however, at the edge, where need is highest and patients are out of other options, access was and remains a constant struggle. This session will focus on how to find out which therapies are promising, how to access clinical trials abroad, what early access programs are and how they function and which role HTA (health technology assessment) plays in the access debate. 

The drug development cycle in a nutshell

Roald Nystad, Norway

further reading

EMA: the journey of a centrally authorised medicine 

Accessing clinical trials abroad- a recent experience

Erik Näsman, MPNE, Sweden

Access schemes for clinical trials abroad- the Nordic experience

While most healthcare systems unfortunately still don't support participation in clinical trials abroad- some do. A positive example!

Steinar Aamdal, University of Oslo, Norway

Mind the gap- Early Access Programs for innovative therapies

Holly Lumgair, Clinigen, UK 

Access, safety and benefit: the value of HTA. Developments in Europe and future view

Alric Ruther, IQWiG, Germany

further reading

An EU-wide approach to HTA: An irrelevant development or an opportunity not to be missed?



16.00- 16.30 Coffee

​16.30- 18.00

HANDS-ON SESSION: MELANOMA ESSENTIALS: the relevant Melanoma studies
In parallel groups, we will be reading the essential Melanoma studies, annotate them and publish them for our community as THE ESSENTIAL MELANOMA LIBRARY. Material and tools provided but please bring your laptop/ tablet.

More information to come shortly on Slack

19.00 Poster competition and Reception

Present your favourite Melanoma advocacy project- past, present and future- on a poster! 

20.00 Conference Dinner 

Sunday, 24th March
Advocacy Day- closed program for patients and patient advocates only 

8.00- 9.00


please make sure you check out

9.00- 10.30

Session: Advocacy- Access to adjuvant Melanoma therapies in Europe

Introduction- overview of approved adjuvant treatments for Melanoma



Koen van Elst, Stichting Melanoom, Netherlands


Kay Curtin, Ireland


Sanne Wiingreen

Gilly Spurrier, Mélanome France



10.30- 11.00 Coffee

11.00- 12.30

Melanoma Kahoot!! Test your Melanoma knowledge

Network update
Skin cancer apps in comparison
Ciprian Salceanu, Romania and Ian James, UK
Patient Pathways
Andrew Evans and colleagues 

MPNE resources and update

Bettina Ryll

12.30- 12.45

Conference summary and closure
Bettina Ryll, MPNE


Lunch and Departure